Prev Next

Grieving “Perfection”

By Amalah

A couple months ago, Quinn emailed me with a topic suggestion for Bounce Back — a topic that was near and dear to her heart, a topic that NONE of the pregnancy or baby books covered, a topic that a lot of parents probably don’t even want to think about — birth defects. They happen. What do you do when it happens to you, to your baby? How do you deal with something that can color your entire birth and postpartum experience with your newborn…without letting it color your entire birth and postpartum experience with your newborn?

And so I wrote back and said yes! I think that is a fantastic, often-overlooked topic for new parents. Now help me write it.

Not only did Quinn offer to share her story of Baby Griffin and his “lucky fin,” her husband Steve went ahead and answered my questions as well. I’m going to tell you right now: I think this is the best post yet, and I can say that because I didn’t actually write it — I just handed the reins over to a fantastic couple of people. It’s a long but worthy read, I promise.

AMY: Okay, so first up: details. Tell us a little about your son and what happened at his birth.

QUINN: Griffin was born with a unilateral hand malformation due to failure to form. He doesn’t have a left hand, just a wrist and five little nubbins. We don’t know why. Arms grow out from the torso, lengthening and then splitting into fingers. For some reason his left arm just stopped growing after the wrist, although it still split and formed the nubbins. We know it’s not inherited, or related to any other idiosyncrasies, or due to anything I ingested or was exposed to. It just happened.

We didn’t know about this before he was born. We’d had a pretty uneventful pregnancy. We did the triple and quad screenings and the standard twenty week anatomy check, like most people. We’d skipped the amnio and CVS because I’m under thirty and neither of us has a family history of chromosomal disorders. We’d been planning on getting a for-fun 3D ultrasound, but we switched from an OB to a midwife in the beginning of the third trimester and I was laid off and it quite simply fell off the bottom of the to-do list. A 3D ultrasound might have shown the malformation…but it also might not have. Ultrasounds aren’t perfect.

I started getting a little borderline preeclamptic towards the end, but I went into labor spontaneously at the end of the 38th week and did the whole no meds, water birth, damn hippies thing. I was in a hospital because my husband and I liked the whole idea of nearby ORs and incubators.

I noticed his hand kind of in waves. He was in front of me, screaming, and one of the midwives was yelling to hold him in the water but to keep his head above the water, and my brain was shattering at the idea that this was my son in front of me. I suddenly thought that I needed to count his fingers and toes because it was tradition…and I kept getting hung up after the first five fingers. Eventually I realized that he only had five fingers.

griffin1.jpg
STEVE: He came out and started screaming. I said oh my god, oh my god a few times. I had about 10 seconds of unbridled giddiness and amazement. Then Quinn said, he has a club hand… look at his hand. Look how little, it looks like a foot. The midwives and nurses didn’t say anything, they kept working, checking his apgars, cleaning him off. They whisked him out of the bathroom to the heat lamp and I followed him. Quinn was bleeding from the tearing but she was able to walk to the hospital bed with help. I asked a nurse whether someone would come to talk to us about his hand and she said they would. I held my wife’s hand and told her everything would be okay, and she smiled wanly at me, but she was being sewn up and we were both exhausted and neither of us actually knew a damned thing.

AMY: I can’t even imagine all the emotions you must feel in those first moments — we all want to immediately declare our babies “perfect” and “beautiful” and so I’m guessing there was a certain degree of…disappointment? Guilt over that disappointment? Something akin to the seven stages of grief?

QUINN: I’m really glad that you’re referring to the grief stages, because that’s exactly what it is. You’re grieving the idea of the perfect baby, the baby you expected. No baby is perfect, but we’re allowed to think most newborns are because we don’t know them yet. When you have a baby with a birth defect you have that illusion ripped away from you pretty roughly.

After it sunk in, I had some really confused, dark emotions. I loved him, but…that wasn’t the overriding emotion. There was regret, and a lot of disappointment. And there was a lot of fear. Fear that he wasn’t well, fear that I was going to be a special needs mommy. I didn’t want to be a special needs mommy. I didn’t think I had it in me.

I became TERRIFIED that this was the tip of the iceberg. That there was something terribly wrong with his brain or his internal organs. I could almost hear our Mystery Diagnosis voiceover: “Griffin Matuszek was born without a hand. DOOM.” The pediatricians all said his heart and lungs sounded normal and he was peeing and pooping fine, but that was all they would say–they just didn’t know anything more. I felt like we were handed our baby and told he was one-handed but perfectly healthy! They think. Maybe. Go ask someone else.

The next few days were pretty intense. We held up pretty well in front of people, but when they left we fell apart. I was determined not to cry in front of anyone except my husband–I was afraid they would think I was a terrible mother who didn’t love her baby–so I spent all the time I should have spent sleeping crying instead.

I also blamed myself for making him wrong. I was worried my in-laws, who are wonderful people so this is ridiculous, would hate me. It took me a long time to get through that. Ultimately it wasn’t until I got reassurance from a whole bunch of doctors and reputable websites that it wasn’t my fault, that this just HAPPENS, that I really began to believe it.

STEVE: It isn’t akin to the seven stages of grief, it IS the seven stages of grief. We grieved for the hypothetical perfect baby who died when he was replaced with the baby we actually got.

Someone would explain that to us later, but I think I had already figured it out when I caught myself in the bargaining phase. I’m agnostic, so I had no one to bargain with and nothing to offer, but there I was sitting alone in the car in the parking lot (where Quinn wouldn’t see) sobbing my eyes out and begging desperately for the hand to be the only thing wrong, for him not to have a hole in his heart, not to be mentally retarded.

It would be a day or two before we were reasonably assured that there was nothing else wrong with his body, and much longer before he (or any baby) would start doing the things that indicated that his brain was functioning normally. So fear was the strongest emotion for me.

AMY: How did you tell people? Did you tell people first thing or wait awhile? Did anyone say something unintentionally terrible before they knew, like that “10 fingers and 10 toes?” question people always say in kind of a joking way? How did you handle stuff like that?

QUINN: Well, we’re geeks with Facebook and Twitter accounts, so…we made a webpage. My husband dashed together a simple text page announcing Griffin’s birth and linking to Flickr, and included a simple warning that he had one hand but was otherwise healthy. We didn’t want people to feel they couldn’t mention it, but we also didn’t want to draw too much attention to it.

I texted my close friends and family. I sent one text saying that he was born and all was well, and followed it up saying that he had one hand.

AMY: How did you feel about taking photos and/or seeing the defect in photos? Were you ever tempted to crop it out or did you feel it was important to really photograph your son as he was?

QUINN: I was pretty adamant that I wasn’t going to hide it from the start. Although…I didn’t exactly mention it in the email to my former coworkers, and the best picture just HAPPENED to have his hand tucked up under his chest. Ultimately it IS important to accept the birth defect, but it’s okay to give yourself time to process things.

STEVE: We told people immediately. I told my family and my boss via instant message and my best friends and coworkers via e-mail, all before leaving the delivery room. It didn’t occur to me not to.
No buildup, just “He was born with an undeveloped left hand.”

These two questions sort of have the same answer, because we had our smartphones, and a laptop in the hospital room, and people were going to expect pictures in e-mail and on Facebook right away anyway.

It did make me feel queasy to look at the hand, back then. It really does take some getting used to. So I kind of liked the photos where you couldn’t see it and you could think he was normal. But I recognized that feeling as a dead end and refused to act on it.

griffin2.jpg
AMY: Tell me a little about what it was like introducing your son to people, or taking him out places for the first time.

QUINN: You know, sometimes this is still a little hard? Griffin attracts a lot of attention in public places–all babies do. When someone’s waving at him or talking with me about him there’s a little part of me that’s always wondering if they’re thinking about his hand. My husband and I actually LOVE it when someone mentions the hand. It’s such a relief to not have to wonder.

Amazingly, we have not gotten a single bad comment. No one has asked if I drank or took drugs. Weirdly, a lot of people think it’s adorable. Children are the best–they’re curious about it, but then that’s it. They’re more interested in playing with him, just like they would with any other baby. I haven’t yet decided whether this is because people are just a lot better than I expected, or if I owe one hell of a thank you note to Disney for producing Finding Nemo.

STEVE:I feel like everyone we know took it in stride. We wanted to talk about the hand and they were all Yeah, whatever, look how adorable! You made an actual tiny person!

We make a lot of jokes, like, “Well, we figure he’ll only be half as grabby as other babies.” and “He may be missing that part, but we didn’t circumcise him, so he’s even with most boys.”

As far as strangers, it’s a breath of fresh air when people actually mention it and we can talk about it. If they don’t, then we feel like they’re just looking and wondering.

Surprisingly, we’ve found that a lot of people don’t even notice it, or it takes them a long time to do so. A grandmother at a barbecue that I took him to took half an hour to notice it, and she was holding him for the last 10 minutes of that! Humans really do fixate on each other’s faces, it seems.

AMY: What things helped you work through the emotions and get to the “acceptance” stage? What set you back? How are you, like, NOW?

QUINN: I won’t lie–I’m still sad sometimes. I wouldn’t trade Griffin for the most perfectly-formed child in the history of the world. But I’d move heaven and earth if it would get him a second hand.

Ultimately, getting answers helped. It helped to hear from doctor after doctor that this was an isolated thing. It helped to hear that I didn’t cause it. It also helped that Griffin started hitting milestones, developing appropriately and growing like some sort of weed child. I hate saying this because the thing I wanted most in the hospital was some damn answers, but that simply wasn’t possible right after he was born.
I wish that more pregnancy and parenting books had information about this sort of thing. Three percent of all babies born in the US have some sort of birth defect, and 70% of them have no known cause. (The CDC has a great webpage on this.) We’ve been amazed at how many people have talked to us about family members or friends who have birth defects–in fact, we learned that the wife of my husband’s oldest friend was inexplicably born without eyes. Fortunately most of these are minor and easily fixed–webbed fingers and toes, holes in the abdominal wall–but they still occur, and there’s simply no known reason. And yet, none of the books I read mentioned that. They were all Fetal Alcohol Syndrome! Unpasteurized cheese! It’s ALL YOUR FAULT!

It also helped to get some perspective. Shortly after Griffin was born, we found out that one of the twin daughters of a childhood friend of my husband’s, Sweet Baby Zane (sweetbabyzane.com) was diagnosed with Type 1 Spinal Muscular Atrophy (SMA). The disease is always fatal within a year or two, and she was just a month older than Griffin. She passed away a little over a month ago. This has had a huge impact on me. Griffin has one hand, and there is nothing I can do about that–no treatments or surgeries. That’s a big deal. But at the same time, it’s really, really not.

STEVE: Finding Nemo. Jim Abbott. And Sweet Baby Zane. I know Quinn is talking about her, so I’ll just add that I’d like to point people to http://sweetbabyzane.com/ to learn more about SMA and how to help find a cure.

griffin3.jpg

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

icon icon
chat bubble icon

Comments

newest oldest most voted
Notify of
Cheryl
Guest
Cheryl

OMG, he’s an adorable baby!!!

chiquita
Guest
chiquita

thanks Amy, for sharing this. It’s a reminder of what is really important.

Jessicawp
Guest
Jessicawp

Thank you so much for addressing this. We found out at the 20 week u/s that Finn had a cleft lip and would probably have a cleft palate as well (he does). It was a huge shock to hear the OB say everything looked great, BUT…we defintely grieved for our lost “perfect” baby. And then felt guilty about feeling that way. We had time to get used to the cleft and had many u/s throughout my pregnancy due to other possible complications. We saw the cleft a lot, it was part of him. And when he was born he was… Read more »

Suzy
Guest
Suzy

Incredible posting. Thanks so much to Quinn and Steve for sharing their inspiring story with us.
Griffin is a beautiful little baby!!

Bitts
Guest
Bitts

We were told at 13 wks. that our baby would have Down Syndrome. It took us the next 6 months of pregnancy to grieve our perfect baby and prepare for the one we were getting. By the time his due date rolled around, I had learned that the old adage is true: you get what you can handle. When the Genetic Counselor calles to schedule a Big Meeting (and says bring your husband and someone to drive the two of you home), you think you CANNOT handle it. But you can. Though maybe Quinn thought she could never be a… Read more »

Heidi
Guest

Oh my, I am crying over here. This IS the best entry, and so sweet.
I agree, most people feel dismayed that they’re baby isn’t “whole” or “perfect” and then feel guilty for feeling that way. Like someone else has the right to tell them how to feel? I don’t think so.
Oh, I loved this post.

Jessie
Guest

Thanks so much for this post. Our daughter was born with hip dysplasia, and even though it’s not a visible defect, she did have to wear a brace for the first 16 months of her life. The brace made it impossible for her to wear little tiny sleepers or the multitudes of tiny cute socks I bought for her. I only got to see her adorable toes at bath time, and I was scared about how I held her and if it would prevent her hip from growing properly. Yes, it was something that was not really very serious, but… Read more »

Jenn
Guest

Thanks for posting this. As the daughter of a man born prematurely with multiple birth defects (missing forearm muscles in his right arm, severe clubbed feet that led to amputation of both feet) over 50 years ago, I’ve heard plenty of stories about the worry and the trials a child can go through. Strong, supportive parents are so important. My grandma is a remarkable woman and my father was raised to believe he can do pretty much anything, it just may take some modifications. It is so much better not to hide, but to be open about what is going… Read more »

Kim
Guest
Kim

My brother was born with hydrocephalus. I always try to think about how my parents felt when he was born; expecting a perfect baby boy and getting a baby that needed multiple brain surgeries. The doctors told my mother that my brother was going to be a vegetable and to put him in a home. I’m glad she didn’t. He is now 25 year old and although he is mentally slow, I would never have traded him. My parents divorced when we were little. About a year ago, my mother (who is not religious) told me that she believed God… Read more »

Olivia
Guest
Olivia

Jessie, my daughter had hip displaysia too, but only had to wear the brace for 6 weeks. At birth, her knee also bent forward, the wrong direction, due to her foot being firmly planted against her head for a considerable amount of time in the womb. For that, she only needed a splint hold her knee bent the correct way for two weeks. Even though her defects were minor, I did cry when we brought her home from the orthopedist. It was so much grief for a lost “perfect” baby, it was that seeing my wee babe in that brace… Read more »

Calli
Guest
Calli

Hi,
Your baby is soo cute! And to give some info on life further down the line, I’m in college with a guy who has the same deal – he’s soo cute too :)…and only has one hand, also since birth. He’s an awesome guy and a leader on campus and I’m a little upset that I haven’t got to date him. I worry about what he thinks of me, not what I think of his hand!

EMS
Guest
EMS

My son was born with a really rare chromosome disorder that wasn’t diagnosed until 2 weeks after he was born. Among other things, he’ll prob. be mentally retarded (he’s almost 2, but they don’t “officially” diagnose this until later.) What bothers me most is when people, usually close relatives, kind of act like our grieving process is over – it’s not, and it prob. will never be. I think I have a bit of post-traumatic stress in which I’m constantly replaying what happened during our 5 1/2 week NICU stay over and over in my mind. Almost 2 years in… Read more »

demelzabunny
Guest
demelzabunny

I have an 11 1/2 year old daughter who is what we used to call retarded; she is non-verbal, can’t toilet herself and basically functions at a 1 – 2 year old level.  A little over a year ago, my husband and I sent her to live at a residential school where she can hopefully fulfill her potential (whatever that may be; she is undiagnosed) and at least learn Skills of Daily Living.  I do not believe in God and that he doesn’t give people what they can’t handle; it this is true, he made a humongous mistake in my… Read more »

Kate
Guest
Kate

Thank you. This post made me feel a little more normal. Our little boy, who I’m 7 months pregnant with now has a CCAM – which is a benign growth on his lung. I go for weekly u/s to make sure it’s stable (so far, so good). After he’s born he’ll require surgery within the 1st year to remove it. The diagnosis was hard to hear, esp. since it’s displacing his heart and the risk of complications is high. I too had to grieve for the child I thought I was going to have. And I’ve spent hours and days… Read more »

Joanna
Guest
Joanna

Thank you so much for this articulate and honest discussion–this topic really isn’t addressed enough, that’s for sure.

q
Guest
q

my husband has two missing fingers on his left hand. he’s told me what it was like to grow up like this many times. the people who believed in him and didn’t protect him from failure are the ones he really appreciates now. his grandparents got him a piano and a computer. now he’s got a room full of vintage keyboards and is the faster typer I know. nothing is going to stop your beautiful son from being amazing. i typically find that people who are faced with a challenge early on in life tend to be the most successful.… Read more »

Becky
Guest
Becky

My 1.5 year old son has duane’s syndrome, which is basically crossd eyes. I’ll be honest and admit I’m still not ok with it. Why my son? I realize it could have been so much worse but it still is a big deal for me. My family is the type to joke about it and says its not a big issue. I hate that. I need someone to tell me “you know what, yeah that sucks. Man, he got a bum deal.” But no one will because it is just cross eyes. I don’t think I can move through my… Read more »

Andrea
Guest
Andrea

Thank you so much for delving into this and sharing your story. I wish we had more resources when our daughter was born. In our case, my daughter was ultimately diagnosed with distal arthrogryposis, but it presented like trisomy 18. The doctors and nurses basically wrote my daughter off, to the point of not even helping me with nursing difficulties when I asked. My daughter is smart and beautiful and spunky, and her hands may not look like anyone else’s but that does not stop her, so we won’t let it stop us either. Incidentally, her hand doctor, Joseph Upton… Read more »

Michelle Pixie
Guest

This is a great post very touching, heartfelt, and raw. I fought back the tears. Thank you for sharing your story.
He has got to be on of the most scrumptious little guys I have ever laid eyes on!

Quinn
Guest

Thank you all so, so much. It took me so long to respond to this because it’s been pretty emotional reading these comments. There are so many of us out there. I’m so glad we’re talking about this. Also, thank you all so much for the compliments on Griffin! I think he’s fabulous, but then, I’m biased. 😉 Becky–you are 100% percent right. You need to admit that your son’s situation sucks in order to fully accept it. It’s part of what Steve and I were trying to say, that you can’t just pretend a birth defect doesn’t matter. You… Read more »

Kari Weber
Guest
Kari Weber

My son Zachary (my first child) was born with a hole in his heart. I remember that my husband and I were all packed up and ready to leave the hospital when the pediatrician came in for “one last check”. It seemed to be taking a while, and suddenly she just said, “I hear a murmur, I have to take Zachary for a chest X-ray” and then JUST LEFT… QUICKLY! We were left sitting on the bed, in total shock. What was a murmur? Why did they need to take an x-ray? Where the He** did they just take our… Read more »

Anonymous
Guest
Anonymous

I had mainly tried to find a site that could give me a medical reason for my sons defects I blamed myself thinking it was somthing i did or did not do i still blame myself even though drs all say it just happens my son was born with a heart murmur, hair on his behind so they thought he had spina bifida but thank god it was just a hairy spot. he was born missing toes and im scared he might not be able to walk the drs say he should be able to and i found out today… Read more »

shellbelle78
Guest
shellbelle78

I saw this pop up in my feed reader and was so glad – our second son, Jack, who is six months old now, was born with the same deficiency. And everything you said in your answers was exactly what we went through. It still makes me sad looking back that my first thought in seeing him was, “What’s wrong with his hand?” Not, look, there’s my beautiful baby (which is what I think now every time I see him). We all have obstacles to overcome, Jack’s is just obvious and physical, but ultimately I believe it will make him… Read more »

Quinn
Guest

Most recent anonymous: You need to see a clinical geneticist. I don’t mean that in a scary way, I just mean that a clinical geneticist is the doctor you see for this–just like an orthopedist is who you see if you have a broken hand. If it helps, this one pediatrician at the hospital examined him and noted that he has a single palmar crease on his right hand. She also said that his thumb was extra long, and told us that these things together meant that this was probably genetic. DUN DUN DUN. I was almost hysterical by the… Read more »

Anonymous
Guest
Anonymous

Thank you so much for this. I am currently 35 weeks pregnant with a son who will be born with a hand condition. We learned about it at our 20 week ultrasound and definitely went through a grieving process at the fact that our son wouldn’t be born “perfect.” We still don’t even know what kind of hand condition he’ll have – despite all the ultrasounds we’ve been to, the right hand is often hidden or unclear – but I believe his will be very similar to Griffin’s. It’s made such a difference to us to see all the other… Read more »

Quinn
Guest

Anonymous- if you want to talk, or want specific advice about treatment, please email me at q&cassidy&@&gmail&.&com without the ampersands. Just to give you a glimpse into the future, yesterday Griffin and his older brother (my stepson) and I were at the grocery store. Griffin kept holding his hand (either one) out to his older brother, who obligingly made CHOMP noises and motions. Griffin immediately snatched his hand back and burst into ringing laughter. This continued for about five minutes straight. I don’t think a single person who saw us noticed Griffin’s left hand, and it didn’t bother Griffin or… Read more »